When I was told that this particular get together was focusing on an initiative called the “Lighthouse Project” my first thought was – “I can’t wait to see their projects!” and this was immediately followed by – “I wonder how the audience, who are working on much needed electronic health records in Ireland, will react when I tell them I developed paper based health records!?!”
I also thought what an appropriate name for such projects – I thought of being a sailor out to sea for weeks on end, and the feeling he might have upon seeing the first light shining across a powerful ocean that could change it’s mood at any given time – much like a chronic condition. This light must signal hope, reassurance, security, safety. And it was universally recognised.
Yes, what an appropriate name for projects that would sit within a national recognised electronic health record system. The Lighthouse Project.
So before I go into the actual days events, first let me explain who I am and why, I feel, I was asked to speak on the day. My personal journey is one that most patients and carers still resonate with today in Ireland.
One cannot know how to solve a problem, unless they know what the problem is.
I am Olive. I myself am a patient, a carer and a mum to three beautiful daughters who have each had different complex health conditions. But it wasn’t until a few years ago, when also caring for my dad who was on 22 medications, I had no choice but to develop my own little booklet to help me manage his multiple medications, appointments and health information. This was because when I asked the registrar in the hospital did he have anything which could help me with same, he apologetically said he didn’t, but kindly suggested that maybe I could go online and look for an app, or maybe try the pharmacy. As I sat there on the side of my dads bed, worried about how I’d cope when we got home, I realised, not for the first time, that there was no Wi-Fi in the hospital. When I got home that night and went on my PC I then found that there were over 40,000 medical apps available – how would I know which one to use? I didn’t have time to pick one, never mind learn how to use one! So the next day, on the day of my dads discharge, I went to the pharmacy and they offered us a great solution called a pillbox. But it was only as we went through my dads medication list with the pharmacist , did I realise that this little pillbox would unfortunately not be able to help us manage the drugs which were in liquid, gel, inhaler, injection or powder format. It also didn’t address the issues such as his appointments or health information. Nor did it educate him on the “why” he was taking his medications, and what would happen if he stopped. And so I felt a need to develop this booklet, not just for him, but for me, as his carer. I needed something to help us all, as a family, to better self-manage his health needs, communicate to one another easily, and also to his health care professionals regarding his medical history. I just wanted my dad to get better.
So roll on four years. The same problems still exist. But I was trying to fix them.
I found that this toolkit had also been a great help to health care professionals and the more I asked people about it, the more positive feedback I got. It eventually got to a stage where I felt it was ready to be validated and so in 2015, it was externally evaluated by NUIG through two national hospitals and eight national charities, as funded and supported by the HSE.
And the results were phenomenal.
Every single patient who had completed the study wanted it rolled nationally.
But was that the most important outcome in all of this?
For me, it wasn’t.
For me, it was the way in which it was developed, designed and delivered with all stakeholders involved in each process, which was the key learning.
And that is why, I felt, I was asked to speak at this event.
Because the eHealth Ireland Ecosystem does exactly the same thing – it develops, designs and delivers its solutions, with all stakeholders together.
It was this that became immediately obvious to me upon arrival in the beautiful Ballsbridge Hotel last Tuesday morning. Just after I registered, I walked into a room that was so full of energy and enthusiasm, that I became nervous – I didn’t want to bring down that mood!
Everyone was buzzing. Like, I mean, everyone.
People seemed relaxed, no-one was eyeing anyone else up and as I walked through the crowd to figure out where I should sit, I was greeted with positivity. I knew everyone in that room, wanted to be there.
It was refreshing.
And daunting. I now had to deliver the goods!
I flicked through my presentation. Forever aiming to have an unbiased viewpoint on the topics on hand, I didn’t go to the eHealth Ireland website first for information – I went to my best buddy Dr. Google. I looked up the definitions of “eHealth” and “Ecosystem” separately, and then as put together as one term. I thought this would be an easy find, but amazingly I found one paper from 2005 showing over 51 definitions of the term “eHealth” and there were over 50 million searches on the term “Ecosystem”!
So I knew before I even arrived on the day that the only way I’d truly know what the definition of an eHealth Ecosystem was by finding out for myself – and I’d just have to be there, to see what it was they did that was different to others!
Bang on time at 10am, Richard Corbridge opened the meeting with over 200 delegates and went through the days agenda. He highlighted the importance of working together and that a national integrated electronic health record system was in the best interest of everyone involved in health services. He gave short descriptors of the Lighthouse Projects, and then, before taking his seat, he took a quick glance down, smiled and introduced “his good friend, Olive” to the stage.
Ah, panic stations! How do you follow the CIO of the HSE!?!
I took a deep breath and off I went.
Now as you got a brief glimpse of what I do already, I’m not going to delve into any more detail about what I presented (and truthfully, I kind of go blank afterwards, probably due to nerves haha!) I did however get to capture some of the slides from the Twitter feeds on the day by searching under #eHealth4all if you want to see some of it [see attached video below]. And so, it was from both this Twitter feed and the energy in the room that I found the audience extremely engaging and supportive.
It was so obvious that everyone was so willing to learn and work together. I had had nothing to be nervous about. I now could breathe again. I sat back looking forward to learning about the Lighthouse Projects and who they would help.
I learned of a little boy who had a debilitating form of epilepsy which took a million dollar technology to eventually diagnose.
I learned of the daily struggles patients with hemophilia go through and why open data was so important to them.
I learned about the difficulty in storing and communicating health information for those who have mental health conditions, such as Bipolar Disorder.
I listened. Once or twice, I found my breath catching as I resonated with similar situations, even if I had not had the same conditions.
Each of the teams, Dr. Colin Doherty, Epilepsy; Dr. Barry White, Haemophilia and Mr. Mel McIntyre and Dr. Seamus MacSuibhne, Bipolar Disorder showcased their solutions, and they talked about the barriers to same. They were all open, honest and ready for the challenge. They were all willing to work together, not only with each other, but with everyone in the room.
I was in awe of the work that had been done. The thought that was going into each project. And the people who were involved in them. But it didn’t stop there.
We were asked after each of these presentations to pick one of these projects to give feedback on, and each had a number of tables with different topics to be discussed. I picked Bipolar Disorder and we were to discuss confidentiality and consent. This was all facilitated in a way in which we all got a chance to speak and express our opinions. And this was a tough topic to discuss!
I was learning so much! Not just about the issues, but about how this was all being done.
We were then told that during the lunch one of the team members would be summarising of all of our findings from the focus group sessions – in the short span of over 30 minutes and over two hundred peoples opinions!
I didn’t think this was possible!
But it was.
Richard went back up on stage and he proceeded to read out the findings from each of the teams, asking each group to clarify on any areas of which seemed grey. We were all given a chance to speak.
I have to say, I didn’t expect this. It was truly an active listening group.
And this was the moment when I knew what an eHealth Ecosystem was.
For me, the eHealth Ireland Ecosystem is exactly what “healthcare” should be – a partnered, proactive, personalised and practical environment, with patients at the centre of all it does. It was refreshing for me, as a patient and carer myself, to be in a space where everybody had their say. There was nobody in the room who didn’t want to be there, and all wanted the same outcome – to help make our health service the best it can be, with technology as an enabler, and people as the engagers.
Okay, so it’s not the definition that you might find on Google or in an academic paper, but it is one patients perspective anyway. It is my perspective.
And I for one, am now delighted to be part of such an exciting initiative so thank you all in the eHealth Ireland team for having me!
Watch a little slideshow I put together of eHealth Ireland Ecosystem Twitter Feed Pictures here – [Be sure to tag yourself or your buddies!]
Please also check out http://www.ehealthireland.ie as there are many initiatives seeking public consultation that you can input to!